From
EUPSA/ERNICA
ERNICA Research Collaboration Webinar on Quality of Life
With Dr. Andre Rietman & Dr. Mikaela Dellemark · hosted by Dr. Jens Dingemann
Part of
Esophageal Atresia 55 items
Chapter 1 of 5 · Fundamentals
Introduction
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What the experts said
Health-related quality of life is a narrower concept than quality of life, specifically relating to individual perception of health-related states and the self-perceived impact of disease and treatment on functioning from social, physical, and psychological perspectives.
Generic health-related quality of life assessments allow comparison between healthy people and patients, while condition-specific assessments are more sensitive to capture issues relevant to particular conditions but do not aim for external reference group comparison.
Condition-specific questionnaires are in general more sensitive to assess treatment response compared to generic questionnaires.
The standard development procedure for quality of life questionnaires includes: literature review, qualitative elicitation from target population, item drafting, cognitive debriefing and pilot testing, item revision, and measurement property investigation.
Cross-cultural evaluation of quality of life questionnaires requires assessment of linguistic/semantic equivalence (correct translation), conceptual equivalence (similar domain importance across cultures), and measurement equivalence (same construct measured with comparable scores).
Life satisfaction and disease severity are not highly correlated; parents of children with cardiac issues sometimes report even higher quality of life than generic population norms.
The two primary uses of quality of life measurements are: comparing people with and without health issues to see disease effects, and finding effects of interventions such as therapy or surgical procedures.
The most widely used quality of life instruments in pediatric surgery research include the PedsQL, CHQ (Child Health Questionnaire with infant-toddler and adolescent-adult versions), Kid-KINDL, KIDSCREEN, and EuroQol.
Common quality of life instruments cover three main areas: physical functioning, mental or emotional functioning, and social functioning.
Proxy ratings (parent reports) and self-ratings typically correlate with each other but not highly, indicating they represent two different perspectives on the patient's life satisfaction.
The SF-36 has scales for physical function, emotional and social functioning, plus additional scales for family function and bodily pain.
The WHO QoL-BREF includes an additional scale about environment and support in the environment, reflecting the International Classification of Function framework.
The Haquel (Hirschsprung's disease anorectal malformation quality of life questionnaire) was developed in the Netherlands more than 20 years ago and has OK to good Cronbach's alpha for internal consistency.
The Haquel demonstrates convergent validity through substantial but not excessive correlation with the generic SF-36, and discriminates between subgroups of patients by disease severity.
The EA-QoL development followed proper methodology including qualitative research, cross-cultural approach, translation, and cognitive debriefing with people in 15 countries to ensure parallel cultural content.
The SCIA (adult questionnaire for esophageal atresia) was developed because the SF-36 didn't capture many health problems and gastrointestinal/respiratory symptom indexes only captured part of the problems specific to adults with esophageal atresia.
The PedsQL asks children from age 5 to give their opinion about their health, younger than most instruments.
The DISABKIDS-25 uses five smileys (neutral in middle, two sad and two happy) instead of verbal options, making it easier for people with language processing problems, non-native speakers, or intellectual disabilities.
In advanced pediatric surgery, cultural evaluation is difficult because populations are so rare that when collected in one country, the sample may not be clinically representative, making it hard to distinguish cultural factors from clinical characteristics.
A patient-reported outcome is defined by the US FDA as a report of the status of a patient's health condition that comes directly from the patient without interpretation by a clinician or anyone else.
Quality of life encompasses an individual's perception of their position in life in the context of culture and value systems, in relation to goals, expectations, standards, and concerns, according to WHO working group definition.
People worldwide differ less than expected in their basic understanding of quality of life, with common elements including feeling physically fit, being socially integrated, feeling psychologically stable, fulfilling daily roles, and experiencing social support in a safe environment.
WHO in 1948 described three dimensions of health in the context of disease, representing an important milestone in quality of life concept development.
In the late 1980s and beginning of 1990s, health-related quality of life entered clinical research, differentiating the medical and clinical concept from the more sociological and political form of quality of life.
A systematic literature review found that the majority of PROM studies in pediatric surgery originated in the Netherlands, followed by Sweden and the United States.
The systematic review identified 85 PROMs used in pediatric surgery, with the vast majority used in children rather than other age groups.
Most PROM studies in pediatric surgery used either a combination of generic and condition-specific PROMs or only generic PROMs.
The most frequently studied conditions in pediatric surgery PROM research are Hirschsprung's disease, esophageal atresia, anorectal malformation, and congenital diaphragmatic hernia.
Fayed argued that the PedsQL, a widely used instrument, is in fact a measurement of health status rather than quality of life, because it focuses more on cognitive appraisal of function level rather than emotional satisfaction.
French researchers proposed an adaptation of the Haquel structure into two main scales (physical and psychosocial) because some questions and scales did not cluster the same way in France as in the Dutch original.
Large reviews found that up until age 8, children show large diversity in quality of life answers and asking the same questions tomorrow would give totally different results, which is why most questionnaires start from age 8.